There's always room for improvement

I usually feel like I’m doing a “good job” taking care of my mom - there isn’t as much second-guessing and panic as there was in the beginning (thank goodness), and as new issues show up I’m getting better at not overthinking and overreacting. I’m mostly ok with the realization that there is no fix, and no reason; it simply is.

All that being said, sometimes it surprises me how near the surface my emotions can be. I took mom to the dentist recently; she gets a cleaning every three months since her ability to care for her teeth has dropped off and she won’t let me do very much to help her. We’ve been doing our best to avoid any major interventions since the way mom experiences discomfort can be extreme and none of us wants to go down that path unless it’s absolutely necessary. During this visit, the hygienist noticed that a tooth seemed to be a little tender and mom was uncomfortable with it being touched.

I was asked about her brushing habits and about how much I was able to help which is an absolutely normal and valid question. The hygienist is a friend I’ve known for twenty years; she’s always kind and caring but for some reason, I felt tears start to well up. I’m doing the best I can for mom but any inkling that I might be failing her in some way makes me feel guilt I know shouldn’t be there. It’s hard to feel like you’re doing all you can but still falling short - even when it comes to brushing teeth. Even when it's 100% self-imposed.

Thankfully I have friends I can talk things out with, fairly decent reasoning skills, and a solid sense of humor. I’ve also been able to find some excellent resources that help me frame situations in a way I may not have thought of, change my attitude for the better (not all the time but, hey, I’m trying), and help me think about things that aren’t always comfortable to verbalize but oh-so-important.

Many of my resources are books - some I’ve found on my own and others were suggested or given to me. One of them, Stone Benches by Judith Ingalsbe, was recommended by a friend and I’ll be forever grateful - it’s that good and it’s made a huge difference in how I communicate with my mom. At first, I thought it was a little “sweet” for me, and the font just about drove me nuts but I kept reading and I’m so glad I did.

I will never be as wonderful a caretaker as Ms. Ingalsbe but her insights, stories, and information have made me a better daughter - I’m far less irritated by the little stuff, I know there is no point in reprimanding my mom if she’s being difficult; and, when she has a concern, for her it’s very real and that’s exactly how I treat it. Through this book, I have learned to say things that will calm her, point out something to distract her, or just reach over and hold her hand. It’s also made me realize that my feelings of isolation and frustration, of how mom’s dementia has changed me, and yes - the guilt, are normal. I’m not going to fall apart any time soon.

Your loved one is not capable of changing. This leaves only one variable in the equation capable of changing, and that would be you. The simplest gestures mean so much to an individual who has lost so much control over their lives. When possible, create situations where they have some control. It is important to build our loved one’s self esteem. For all our loved ones are no longer able to do, there is still so much they can do. Each one is a unique, wonderful human being with impressive gifts and abilities all their own. - Judith Ingalsbe

Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler is another book that was recommended. Although some of the subject matter in Knocking on Heaven’s Door is difficult and, due to our culture,  can almost be described as taboo - it is real, incredibly moving, thought-provoking, and beautiful.

In short, the book takes a hard look at how the medical industry is failing at end of life care - not failing us by not doing enough; failing us by doing too much. In 2010, Ms. Butler wrote an article for the New York Times, What Broke My Father's Heart, which was a precursor to the book. The response she received surprised her, as she wasn’t quite sure how readers would react, and it made her realize that there are so many others who are going through their own version of struggle and self-doubt.  

Ms. Butler’s story is far less sweet than Ms. Ingalsbe’s. She had a very different relationship with her parents and she is brutally honest about them and herself. Her choices weren’t always perfect and some of the thoughts she shared were hard to read while others were from a place of deep love. But that is part of being human; we make mistakes, we hold on to past resentments, and we learn that relationships can change and grow into something different and often better. As for me, I’d love to have a couple shots at a “do-over” button - it would make 3 A.M a whole lot quieter in my head.

Knocking on Heaven’s Door made me take a hard look at what I would do if mom had a stroke or a heart attack; often, it seems as though the medical field has a habit of looking at a singular condition rather than the entire person. As in Ms. Butler’s dad’s case - he also had dementia - when is medical intervention too much? If I were told mom needed heart bypass surgery or a stent or a pacemaker I’d really have to give it some thought. Before reading this book I most likely would go along with what a doctor recommended - most of us are conditioned to do just that. However, we don’t have to - we don’t have to agree to a procedure, or being moved to ICU, or another type of intervention.

If there ever comes a time when I have to make a serious decision about mom's care, I hope I can be brave enough to do what’s right for mom and her needs; however, you never really know what you’ll do until you’re knee deep in it just trying to find the right way out.

“As you move through this life and this world you change things slightly, you leave marks behind, however small. And in return, life — and travel — leaves marks on you. Most of the time, those marks — on your body or on your heart — are beautiful. Often, though, they hurt. - Anthony Bourdain